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LEND Family Mentorship Models

The long-awaited LEND Family Mentorship Models are here! This document was written by LEND programs for LEND programs and contains several different versions of this experience from across the network. The LEND Family Discipline Network (LFDN) hopes you will use this document to help inspire or develop your own family mentorship experience in your LEND program.



Fall CampLIFE to Take Place October 21-23, Registration to Begin August 1

LIFE - it stands for Leadership, Independence and Friends through Experiences, and it's what embodies the spirit of Camp LIFE, a unique and inclusive camping adventure for children with disabilities and their siblings. Held twice a year at the barrier-free facilities of Camp For All in Burton, Texas, Camp LIFE provides recreation for children ages 5 and up with disabilities and their siblings while offering a weekend of respite for their parents.



Mailman Center for Child Development Faculty Awarded Dual Grants to Improve Language Skills for Children with Hearing Loss

Investigators Dr. Lynn Perry and Dr. Daniel Messinger at the University of Miami College of Arts and Sciences Department of Psychology have been awarded federal funding to study the development of children with hearing loss at the University of Miami's Debbie Institute, which is affiliated with Mailman Center for Child Development. Children with hearing loss are less likely to read at grade-level than their typically hearing peers'a gap that exists as early as preschool.

The Heart of Texas Gear Up Gaining Early Awareness and Readiness for Undergraduate Programs



Drs. Linda Castillo and Marcia Montague, at Texas A&M University, received a Heart of Texas GEAR UP Partnership grant, and launched GEAR UP programs in partnership with Bryan ISD and Hearne ISD. The partnership will use grant funds to develop and implement a longitudinal support system for the students and families in the class of 2026.



COVID19 Shifts Family Mentoring Experience

Va-LEND trainees have always appreciated close interaction with their mentoring families through the Family Mentorship Experience (FME) program, a highlight of their time in Va-LEND. However, starting in March, due to the COVID-19 pandemic, in person visits were no longer feasible due to social distancing.



COVID-19 Public Health Webinar Series

Join us for this 4-part webinar series, as we review what we currently know on disability inclusion as it relates to this emerging issue. Each session will be 75-minutes.

A family of 3 sit down close to each other, smiling. There is a mother, father, and 6-year old boy.


Family is at the Heart of Va-LEND

Submitted by Jennifer Drummond

For over 20 years Family Mentorship Experience (FME) has been an integral part of Va-LEND. The goal of FME is for the mentoring families to teach the students about their life as a parent of a child with special healthcare needs. Trainees schedule at least five face-to- face visits during the academic year with their family and maintain an activity log. Mentoring families often participate over a period of years, and can choose to be part of Va-LEND for many reasons.

Cover of 2020 Exceptional Parent Guide: Navigating Special Needs Resources


Former NJLEND Family Fellows Partner with Family Voices NJ to Highlight Parent Professional - Partnerships in Training Programs in the Exceptional Parent Guide 2020: Navigating Special Needs Resources

Two former NJLEND Family Fellows partnered with Family Voices NJ recently to highlight parent-professional partnerships in training programs in the Exceptional Parent Guide 2020: Navigating Special Needs Resources. Their article on matching future healthcare professionals with families of children with special needs highlights the NJLEND Mentor Family Experience as well as other opportunities for parents to serve as educators of future health care professionals.



NJLEND Culture and Family Panel

On December 6, 2019, the New Jersey Leadership Education in Neurodevelopmental Disabilities (NJLEND) program at The Boggs Center on Developmental Disabilities held a didactic seminar focused on cultural competency. The didactic seminar session included a family panel comprised of three parents representing the following cultural backgrounds: West African, Hispanic/Latino, and South Asian.



50th Year Anniversary of the Institute on Human Development and Disability (IHDD)

This year marks the 50th year anniversary of The Institute on Human Development and Disability (IHDD). IHDD was established at the University of Georgia in 1969 as part of a national network of federally-designated centers now known as University Centers for Excellence in Development Disabilities, Education, Research and Service (UCEDDS).



Mailman Center for Child Development LEND Trainee Awarded JCCAP Launch Award (FL UCEDD/LEND)

Pediatric psychology intern Nicole Lorenzo, second left in picture, was awarded the Journal of Clinical Child and Adolescent Psychology (JCCAP) Launch Award. She received this recognition during the JCCAP Future Directions Forum on June 28-29 in Washington, DC.



MMI's Adult Behavior Medicine Clinic Making a Difference (NE UCEDD/LEND)

He'll sing the same words over and over. He'll grab himself. Sometimes, he might try to grab others. Sharon, Niko's mother, believes that if Niko didn't have Down syndrome -- an identifiable developmental disability -- the people he meets in public might have called the police on him by now.



Fabric not Fringe: Weaving Family Involvement throughout Training and Practice for Professionals and Advocates Working with Individuals with Disabilities and Special Health Care Needs

A Whitepaper from AUCD's Family Discipline Workgroup

This white paper approaches family involvement from the perspective of the family discipline itself, and the ongoing paradigm shift in family-centered care--from fringe to fabric. This document includes a summary of the history of family involvement in the LEND network and a series of 8 individual handouts which detail the definition, need, benefits, resources and strategies associated with each type of family involvement.



Rubinstein-Taybi Syndrome (RTS) Event at the Newport Aquarium (OH UCEDD)

Rubinstein-Taybi Syndrome (RTS) Event at the Newport Aquarium On the last weekend in January, the UCCEDD at Cincinnati Children�s hosted an RTS booklet release party at the Newport Aquarium, drawing over 100 guests from as far as Michigan, Illinois and Tennessee as well as regional guests from Indiana, Kentucky and Ohio! The booklet, �Understanding Rubinstein-Taybi Syndrome: A Guide for Families and Professionals� was developed to help family members of children with Rubinstein-Taybi Syndrome better explain their child�s condition to healthcare providers, teachers and family members. The booklet and event could not have happened with the generous support of the Dr. Jack Rubinstein Foundation at Cincinnati Children�s.

Children and the Weinberg Child Development Center, including Danny (far left), sit around a table as staff speak to HHS leaders.


Inclusion Today, Community Living for Life (Georgetown UCEDD)

HHS leaders had an opportunity to see this inclusive model in action and learn about the innovative partnership between the Georgetown University Center for Excellence in Developmental Disabilities (UCEDD) and Easterseals DC MD VA that makes it possible. HHS Deputy Secretary Eric Hargan, Assistant Secretary of the Administration for Children and Families Lynn Johnson and ACL Administrator Lance Robertson visited several classrooms and met with staff and parents at the center to hear about how the program works and the difference it has made for families.

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